Awareness is trendy. Everywhere you look people are raising awareness about things. Sometimes even things they know very little about.
For example, here’s a 2-minute awareness video titled “Listen” that is intended to “inspire positive change through a deeper tolerance and understanding” about autism (Trigger/Seizure Warning for flashing graphics, loud abrupt sounds).
Do you feel more aware? Do you understand what it’s like to be “a child who is non-verbal” and an “extreme case” (in the words of the producers)?
No, you don’t. How do I know this? Because the people who made that video don’t know what it’s like to be a nonverbal autistic child.
Neither do I, of course. I am not and nor was I ever a nonverbal child. Only a nonverbal autistic child or someone who was once a nonverbal autistic child understands what it’s like to live that experience.
I am autistic, however, and I know that my vision is just fine. The world is not blurry to me. People and objects don’t fade in and out of focus. I don’t see blank objects or perceive the world in flat 3-color animations. Continue reading I Don’t Need Your Awareness→
Last November I wrote about my insomnia and nightmares. Since then, I’ve been conducting some experiments. Here’s an update on what I’ve learned:
In early December I started taking melatonin and I immediately felt like I was sleeping better. To be certain I wasn’t just imagining that my sleep had improved, I conducted a 2-week sleep study on myself.
The Scientist hooked me up with an armband that monitors sleep quality. I wore it while I slept for two weeks, one week on the melatonin and one week off. Thanks to the software that came with the armband, here’s a graphic representation of how well I slept during each of the weeks:
I was surprised by how frequently my sleep is interrupted on any given night. There is one night out of each week that I got a long uninterrupted period of sleep. On most nights the longest period of continuous sleep is a couple of hours or ninety minutes. I knew that my sleep patterns were disrupted, but I didn’t know the problem was this bad.
I also found it interesting that I have to spend 9-10 hours in bed to get 8 hours of sleep.
So does the melatonin work? I averaged 25 minutes more sleep per night when I was taking it, which added up to an additional 3 hours of sleep for the week.
Since doing the sleep study two months ago, I’ve continued taking melatonin and it feels like my sleep has continued to improve. There are still nights where I only get 5 hours of sleep (last night, in fact) or I’m wide awake at 3:30 AM, but they’re less frequent. In general, I fall asleep more quickly. The melatonin creates a pleasant drowsiness that makes it easier to fall back asleep when I wake up during the night. Some days I feel a little sleepy in the morning, but that fades after I exercise, which I do first thing after getting out of bed.
If you’re considering taking melatonin as a sleep enhancer, there are some things you should know:
Melatonin makes you sleepy. Take it only at bedtime. I take 5 mg about 30 minutes before bed.
High doses of melatonin have been associated with increased depression and psychosis in people already suffering from these conditions. Also, women who are pregnant or trying to become pregnant, nursing mothers, and individuals with cancer, leukemia, lymphoma, multiple myeloma or Hodgkin’s disease should not take melatonin. It’s a good idea to consult with your doctor before starting the use of a melatonin supplement, especially if you are being treated for any other condition or taking any type of medication.
In the US, you can buy melatonin over-the-counter at stores that sell vitamins and supplements. It comes in 0.75 to 5 mg doses. Taking the smallest effective dose is safer.
Melatonin makes you feel drowsy and relaxed but not drugged, so you should still be able to easily wake if necessary, for example to respond to an emergency call from a family member.
It’s often recommended that you take melatonin every other day so you don’t inhibit natural production. (Personally, I think my natural production is already screwed beyond all hope and always has been, so I take it every day.)
Some people take melatonin for a few weeks then take a week off on the belief that it loses it’s effectiveness if taken continuously. I’ve been taking it for 5 months with only two weeks off (one due to illness and one for the sleep study). I haven’t seen a drop in effectiveness.
If you feel groggy in the morning, try reducing the dosage.
Some people experience nightmares when taking melatonin. (I’ve found that my nightmares have lessened–more on that in the next part).
Other side effects can include: mild headache, upset stomach, lower sex drive and depression. Again, reducing dosage can alleviate side effects. Most people don’t experience any side effects at a dosage of 1 mg.
Some people experience rebound insomnia when they stop taking melatonin. I stopped twice for about a week each time and didn’t feel like my insomnia was any worse than it had been before beginning the melatonin. One way to avoid potential rebound insomnia is to taper off, using lower dosages over 1-2 weeks if you decide you no longer need to take it.
My Nightmare Journal
When I wrote about nightmares, I suspected that they were connected to unprocessed bouts of anxiety. To identify trigger events, I started a log of my nightmares along with some details like possible triggers and whether I’d felt like I processed the triggering event. My goal was to become more aware of triggers and spend time working through them during my waking hours rather than letting my sleeping brain get creative with them.
According to my log, here is # of nights that I had nightmares each month:
Nov 15th-30th: 4 nights
December: 10 nights
January: 3 nights
February: 1 night
March: 0 nights
April : 0 nights
I know what you’re thinking: You did it! You learned to identify your triggers and process your anxiety!
Well, no. I tried that all through December and failed miserably. Then in January, I said “fuck you, anxiety” and I wrote this. And hey, the nightmares disappeared!
Two things seem to be at work here. First, melatonin helps me sleep more deeply, which makes my dreams harder to remember and less vivid. Of the 14 nightmares I had after starting on the melatonin, I rated 6 mild and 2 moderate. That alone is a relief.
The other thing that’s happening? I’ve become autistic in my sleep! On January 23rd, I got my flap back in a dream. After that, I had only 2 nightmares and 1 of them didn’t fit my typical nightmare profile at all. I’ve started dreaming in an entirely different way.
In my dreams now, I often tell people that I’m autistic or consciously think of myself of as autistic. That’s completely new. Twice, when it seemed like someone was going to attack me, setting off a typical nightmare scenario in which I had to physically defend myself, the police showed up and took the threatening person away! That’s never happened before. Another time, I was lost and couldn’t find my new (in the dream) apartment. I told some people who worked in the building that I was autistic and couldn’t remember where I lived and they all offered to help me. That never happens in my dreams either.
This is really exciting. I feel like the way I’m thinking about myself and my relationship with the world around me is changing in a profound way. The changes to my dream life are concrete evidence of this.
That’s not to say I don’t have any disturbing dreams. I have plenty. I dream that I’m late for important events. That I need to call 911 but no one answers or the phone doesn’t work. That I need to run but my legs don’t work. That I’m blind. That I’m in school but don’t know my class schedule. That I have a baby but keep forgetting to care for it.
I also still have weird, inexplicable dreams. That I’m playing golf, but in the opposite direction of everyone else on the course. That I’ve accidentally rubbed the ink from my tattoo off and when I check it in the mirror I notice that I’m also pregnant.
All of those dreams are unsettling, but they aren’t nightmares. I don’t wake up sweating with my heart pounding out of my chest. I don’t cry myself awake. I don’t startle awake because the dream has become so intensely physically painful that I can’t stand it anymore. I don’t spend most of the next day trying to forget frightening images. I’m not reluctant to go to sleep the next night.
I’m okay with having occasionally unpleasant dreams, as long as the really bad nightmares stay away. Will they? Who knows. I’m in a fairly stressful period right now, one that would have typically triggered a nightmare cycle in the past. So far, nothing.
I’ve mentioned my “missing word problem” here before. You may have noticed it in reading the blog or my comment replies–my tendency to skip over a small but necessary word when I write. This is more than a simple problem with typos, which I can easily catch and fix when proofreading.
The mystery of the missing words had proved intractable enough that I’d given up on solving it.
Until now, that is! I’m reading “The Mind’s Eye” by Oliver Sacks and right there in Chapter 2 is a potential answer: aphasia.
Aphasia is a disruption in expressive or receptive language. It can be as severe as a complete loss of understanding of language, including the inability to speak or think in words. (Aphasia usually affects all forms of language, not just speech.) “Global aphasia” often results from a brain tumor, stroke, traumatic brain injury or degenerative brain disease.
However, milder forms of aphasia are characterized by:
difficulty in finding words (especially nouns, in particular proper nouns)
a tendency to use an incorrect word without a change in sentence structure
In discussing notable case histories of aphasia, Sacks mentions the English writer Samuel Johnson, who experienced aphasia after a stroke at the age of 73. While Johnson eventually regained the ability to speak, he “made uncharacteristic mistakes, sometimes omitting a word or writing the wrong word” in his writing and correspondence.
Adding Up the Evidence
I omit words when I write–more often than the average person it seems–at a rate of about one missing word per one to three hundred words, more if I’m tired (yes, I’ve started keeping track).
The missing words are small but important, like not, an and the. I need to proofread multiple times to catch them, often in an alternative format, because my brain likes to help me out by pretending the missing word exists and skimming right over the omission.
I sometimes use the wrong word without noticing. In writing, it tends to be a word that is close in spelling or sound, though not necessarily in meaning, like bring instead of brain. When speaking, my substitutions are more entertaining. For example, last night The Scientist was using a kitchen towel to clean up a mess.
“Put that in the dishwasher when you’re done,” I suggested helpfully.
He looked at the towel and frowned. “You mean the washing machine.”
Right. That’s exactly what I meant. And what I thought I’d said. This happens a few times a week and I rarely notice that I’ve done it until someone points it out. It’s more common when I’m fatigued or in a setting with a lot of distractions.
I have trouble with retrieving words, especially names of people and things:
“I’ll recycle the, the . . .” I’m staring at the newspaper and pointing at the newspaper and I cannot for the life of me come up with the word for it. All I have is a blank–a tangible, almost physical hole in my mind where newspaper should be. “I’ll recycle that that . . . thing after I finish reading it. $%&*! WHY ARE THERE SO MANY DIFFERENT WORDS FOR THINGS?!”
I’d been attributing the increasing frequency of gaps in word retrieval to getting older. It’s frustrating, especially when I’m trying to find the right word for a written piece and it refuses to surface. Sometimes it will be hours before I can come up with the word I’m looking for; fortunately I’ve learned how to set the problem to process in the background. This often results in me randomly exclaiming things like “dichotomy!” at inappropriate times.
Is Aphasia the Answer?
If this is indeed mild aphasia, then I finally have an explanation for some minor but annoying language difficulties. Perhaps my auditory processing delay is a form of receptive aphasia?
Then again, this could all be tied to Asperger’s. I’ve heard others on the spectrum mention difficulty with finding words at times. Our issues with processing spoken language are widely known. The missing word problem, though? Does anyone else experience that to the degree that I do?
Eager to learn more than what Sacks presents in his brief chapter, I Googled aphasia and instantly regretted it. Here’s what I found at that reliable bastion of truth, Wikipedia:
“Acute aphasia disorders usually develop quickly as a result of head injury or stroke, and progressive forms of aphasia develop slowly from a brain tumor, infection, or dementia.”
My language glitches have become frequent enough in the last 2-3 years that I can no longer ignore them. The missing words. The struggle to retrieve words. The odd, unpredictable substitutions. The Scientist says that my receptive language difficulties seem to have gotten worse in the past year too. I ask him to repeat himself a lot, especially when he’s not facing me and I don’t have the advantage of watching his lips.
And this is where I think it pays to stop Googling and back slowly away from the neurology textbook.
The language oddities I’ve described here are firmly in the “inconvenient” category for me right now. Unless that changes, I’ll consider the similarities to aphasia symptoms an interesting bit of trivia. Stay tuned . . .
**In proofreading this multiple times, I found 7 missing words (my, their, a, I’m, an, the and of) and 1 incorrect substitution (ever for even). There may be others that I missed.